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Despite Misinformation, Inflammatory Breast Cancer is Rare

  • October 25, 2006
  • Number of views: 12895
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By Doug Kaufman, MDConsult.com, October 25, 2006

As a disease, inflammatory breast cancer is rare. But, due to an inflammatory television news feature that grew legs on the Internet, inflammatory breast cancer has caused a panic out of proportion to the risk.

"We''ve certainly been hearing a lot about it," said Dr. Catherine Appleton, a radiologist in the Breast Health Center at the Siteman Cancer Center, part of Barnes-Jewish Hospital in St Louis. "The main impetus for concern among the public is that [TV] story. I think, at last count, it had something like 10 million hits on the Internet. I did see the story, personally. And while it did contain some valuable information, overall, it was a bit sensationalized, and a few of the things they said were misleading, from a medical perspective."

As a result, people are alarmed.

"We have received a tremendous number of calls from patients who are concerned that they might have inflammatory breast cancer, or that something was missed," said Dr Appleton, who is also an instructor of radiology at the Washington University School of Medicine in St Louis. "We''ve made great efforts to allay any concerns they might have. And most of those patients, we''ve brought in and examined to make sure there wasn''t anything going on."

While taking patients'' concerns seriously, doctors can ease fears.

"Inflammatory breast cancer is exceedingly rare," Dr Appleton said. "Breast cancer, obviously, is very common. But of all the cases of breast cancer that are diagnosed in any given year (approximately 200,000), only about 2 or 3 percent of them are going to fall under the moniker of inflammatory breast cancer."

The story may have also created a false impression that medical experts were unfamiliar with inflammatory breast disease.

"The other thing I didn''t like about the story was they kept referring to inflammatory breast cancer by an abbreviation of IBC, which is not the jargon used among physicians—certainly not used among breast cancer specialists," she said. "We call it inflammatory breast cancer or inflammatory breast carcinoma. I thought it was very unfair the way they called physicians and clinicians and asked what they thought about IBC. People were left puzzled by that, because nobody actually calls it that. I thought that was certainly one of the most misleading components of the story."

Still, some of the information presented by the story does bring to light important issues, Dr Appleton said.

"If women do have changes in their breasts, such as redness, thickening of the skin or [other] changes, we want them to bring that to the attention of their doctor," she said. "But more often than not, those are symptoms of mastitis, which is an infection of the breast. Inflammatory breast cancer is far more rare."

Contrary to what was presented in the story, Dr Appleton said, inflammatory breast cancer is not new.

"It''s been well documented and described in the medical literature for decades," she said. "[The TV station story] also named it the ''silent'' breast cancer, and that was a little bit of a dig at mammograms. Because frequently you don''t make the diagnosis of inflammatory breast cancer based on a mammogram. It''s a clinical diagnosis—it''s staring you in the face. The patient comes in and has changes that are clinically obvious just by looking.

"So, again, it''s very misleading to call it silent," she continued. "As a breast imager, I took great issue with their implication that mammograms are useless in the diagnosis of any type of breast cancer. Because we really encourage women to get annual mammograms starting at the age of 40. There is a substantial amount of data to support that screening mammograms saves lives."

The story first aired in early May, Dr Appleton said. Then it took on a life of its own on the Internet.

"Prior to this, patients would never call up and say ''I think I have IBC or inflammatory breast cancer.'' In late June or early July, we were noticing a real spike in our phone calls [about inflammatory breast disease], as were our surgical colleagues," she said. "That''s probably when, almost hysteria, started to develop."

Typically, doctors should make this diagnosis without difficulty.

"Most physicians out there are aware of this diagnosis," she said. "Certainly breast specialists, breast imagers, oncologists, we are all very well versed in inflammatory breast carcinoma, despite it being very rare."

In 2004, there were almost 600 new breast cancer diagnoses at the Siteman Cancer Center, Dr Appleton said. Only about 14 of those cases were inflammatory breast carcinoma, she added.

"And, you have to keep in mind that we are a tertiary referral center, so we are going to have a disproportionately higher number of cases than a non-tertiary referral center," she said. "So, on average, there are a little over 200,000 new cases of breast cancer [per year]—that''s what we would expect in 2006. ... You might go months and not see a case of [inflammatory breast carcinoma]. But we see a high volume of patients with breast cancer, so we see more of it than a family practitioner who doesn''t specialize in breast disease."

Inflammatory breast carcinoma is a very aggressive disease, Dr Appleton said.

"When it presents, by virtue of the fact that you have the changes in the skin, it means the cancer has already involved the dermal lymphatics, part of the lymphatic drainage system," she said. "So, by definition, it''s already an aggressive cancer. The survival and mortality and morbidity of inflammatory breast cancer is not as good as the more common invasive ductal carcinoma, for example. However, great strides have been made in recent years, and there has been a dramatic improvement in the survival. It used to be [incurable] and now it''s much more treatable."

Warning signs include detection of a lump on the breast; changes in the skin, particularly peau d'' orange, which is an orange-peel appearance to the skin; redness; itching sensation; plus any changes in the nipple, including scaling, flaking, or inversion, where the nipple starts to turn inward.

"Those are classic signs that you need to be seen by a physician immediately," Dr Appleton said. "Now in a young patient who presents with redness in the breast, most of the time that''s going to be an infection. It''s reasonable for a physician, barring the presence of any other symptoms, to treat the patient for an infection with antibiotics. If they don''t improve in short order—7 to 10 days—then you need to be concerned that maybe there''s something more malignant going on.

"So, it''s absolutely appropriate, when the clinical situation looks like mastitis, to treat the patient for a short interval to see if they respond to antibiotic therapy," she said. "You''re not going to cure inflammatory breast cancer with a round of antibiotics."

Diagnosing inflammatory breast cancer involves a clinical exam and a punch biopsy, Dr Appleton said. Physicians should make sure patients get clinical breast exams every 2 years between ages 20 and 40 and every year starting at age 40. Women should start having mammograms at age 40, earlier if they have a family history of breast disease.

"In addition, ... if there is a concern for inflammatory breast cancer, we absolutely want that woman to get a mammogram, because there could definitely be an underlying mass that we could see on the mammogram," she said. "We would also want to do a biopsy of that."

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